So I've been asked lately, "Why did you decide to take up blogging again?", "Why did you pick this title?", and "How is your son today?”
I'm glad that people care enough about my son to read his caringbridge page, and call me to ask if there is anything that they can do. I am usually completely stunned and blank when they ask, but just knowing that if I need to pick up the phone and ask for something super random, makes me very appreciative and emotional – which lately has not been rare!
I decided to start writing again for a few reasons. One of which is to keep my sanity. There is something so fluid about creating a conscious thought in your mind and then putting it on paper - or in this case, the internet. If something I say can resonate with at least one person, then I know that I'm not crazy. Yeah, it sounds a little vain, but I'm pretty confident to know that once I fill this blog up to the brim with my family's stories and trials, someone out there will really believe that I'm not nuts, and it will make all these keystrokes worth breaking a nail for.
Another reason I decided to pick up a blog again is because I want to help express my son's thoughts where words for him is really non sequitur.
What do you mean by that Em? Well, my son can't talk, and he may never be able to. But I refuse to put a medical label on my son that states that he is mentally retarded, when as a parent you know what your kid is saying. The IQ test that is used for children/ adults with certain chromosomal abnormalities or mental disabilities is written with the intention that the child/adult can speak. Well what if your child has a chromosomal abnormality like Emanuel Syndrome where 90% of them are non-verbal? I am going to let a test that would frustrate both the child and parents, define my child's mental capacity? I'm just not that kind of Mom. I think this would be a perfect outlet to tell the world what he’s “saying” with my help by using the one tool that he can’t: Words. Maybe one day he'll be able to read this blog and say "Wow, my mom totally knows me, even at 18 months old."
Why the title? In this blog, you will see just how resilient he is. You will see how he overcomes so many obstacles in his little life, and how wonderful this miracle is.
Thursday, March 10, 2011
A rant about healthcare and a kid with special needs
This may be the beginning of a very long rant, and maybe only those with special needs children can understand where I'm coming from, but I just don't get why we have to jump through flaming hoops of death just to get our child NEED based aid.
According to SSI/ disability/Medicaid I make $500 more over the poverty line, and I have 1 car too many. (We have 2, one is mine and one is Rob's) Because of this my child cannot have Medicaid that would actually COVER the cost of all these specialists he has to see. Mind you they did not ask me where my money goes to each month, or copies of the medical bills, or really disclose anything other than my salary range. They just deemed me as ineligible solely due to what my salary is.
Yet a teenage mother who does drugs and yet find themselves to be completely poor can get Food Stamps, go on Welfare, and suck the life out of the system (mind you they also get the luxury of having a completely normal child, go figure!). I actually for a moment contemplated quitting my job so that my son can get need based aid because, well, he NEEDS it.
I'm sorry but unless you are a millionaire you cannot afford a child with special needs out of pocket. You NEED health insurance, in some instances YOU NEED Medicaid, and you NEED someone who knows the system that can help you get it. In 2010 adding up ALL of Seby's medical bills, including his heart cath., dr's appts, medications, sedations, lab work, and equipment exceeded over $150,000 (From September through December).
I was told today that my child is my responsibility and NOT the states. I've been told today that I should have been prepared both emotionally and financially to handle the possibility of having a child with special needs.
How? I went to every single OBGYN appt, and everything was "normal". I had every test I could imagine that wouldn't harm the baby or me and all the results came out fine. Even his kidneys (which this is still hilarious to me) were within normal range!
Really? You're going to make me feel like a bad parent, because I had no idea that I had an 11;22 balanced translocation in my human genome and therefore produced an offspring that would never be able to fend for himself in this inhumane world?
So then every person should have at least 1.2 million dollars in their bank account to pay out of pocket for the possibility of having a child with special needs. Because that's how much it costs, out of pocket, with no insurance. I am immensely positive that I have some ES Moms that can top that!
My child has every right to have the same care that your child does. Yes, my child has to see a specialist for any possible little thing, but wouldn't yours if your child fell out of a tree and broke his arm, or God forbid, his neck? Wouldn't you want to make sure that your child has the BEST possible care that you could provide for him?
How would you feel if the care you can provide for your child was completely up to the insurance company? What if the insurance company said, "Oh well, I know that this (insert whatever medical thing here) can save your child's life, but we can't pay for that and you can't afford it out of pocket so you might as well say goodbye now."
Think about it, FEEL it, and TELL ME how that would make YOU feel.
I truly believe that this world is not ready for handicapped issues, people, or anything relating to the word handicapped, and I was proven right today. Those that are so completely insensitive and naive to think that the cost of having a child with special needs vs. the cost of having a "normal developing" child are equal, seriously needs to read a mother frikkin book, because they are completely ignorant.
I am not asking my child to be treated any differently than any other, but if my child needs to be seen by a certain Dr. there should be NO REASON, whether financial or not, that my child is unable to be seen.
Yes, my son has been turned away from other practices because "they don't take my insurance." Or they don't "take THAT form of Medicaid", and I am still LIVID about it, can't you tell? (But at least my hubby tore them a new one before we walked out of the office) I was naive enough to think that just because I had work insurance and I was paying $200 a paycheck for it that my son would be covered %100. It doesn’t. Not when you have a child with Special Needs. It doesn’t matter what insurance you have or what condition your child has. It's not right for the insurance companies to jack up the price of services (Lab work 7k? WTF!) nor is it fair to them to have to pay hundreds of thousands of dollars in malpractice insurance, but it's done anyway. So I'm sorry if you think that I am an unfit parent because I can't afford a 40k heart catheterization, but at least I'm doing something about it, all you're doing is judging.
Yes, I am the parent that will probably pitch a fit if someone is blocking the handicapped sidewalk ramp, because the other person who has NO IDEA what I'm going through is being an inconsiderate SOB and my son’s special chair weighs a ton.
Yes, I am the parent that will DEMAND to be seen at a Dr's office from here on out because now I know that it is my son's GOD GIVEN RIGHT to be seen, and it is well within his rights as a US citizen to have the state pay for that super-special-one-of-a-kind Dr. because the US has decided that raising the cost of a simple blood test will help our economy (How, I have no friggin idea, I’m not an Ecom major - just a really angry Mom). It is not my son's fault that he was born this way, and it is not my fault as a tax payer that I need to pay millions of dollars in medical bills because as some people put it "I should have known better than to not be prepared for the cost of a child with special needs." I pay my Taxes. I Pay Medicaid Taxes. My son should have the right to receive Medicaid Benefits.
Screw you and your perceptions. My Son is my gift from the universe, and as that gift it is my obligation to take care of him, by whatever means possible even if that means getting government granted need based aid.
*bows*
and off my soapbox I go... I feel better...
According to SSI/ disability/Medicaid I make $500 more over the poverty line, and I have 1 car too many. (We have 2, one is mine and one is Rob's) Because of this my child cannot have Medicaid that would actually COVER the cost of all these specialists he has to see. Mind you they did not ask me where my money goes to each month, or copies of the medical bills, or really disclose anything other than my salary range. They just deemed me as ineligible solely due to what my salary is.
Yet a teenage mother who does drugs and yet find themselves to be completely poor can get Food Stamps, go on Welfare, and suck the life out of the system (mind you they also get the luxury of having a completely normal child, go figure!). I actually for a moment contemplated quitting my job so that my son can get need based aid because, well, he NEEDS it.
I'm sorry but unless you are a millionaire you cannot afford a child with special needs out of pocket. You NEED health insurance, in some instances YOU NEED Medicaid, and you NEED someone who knows the system that can help you get it. In 2010 adding up ALL of Seby's medical bills, including his heart cath., dr's appts, medications, sedations, lab work, and equipment exceeded over $150,000 (From September through December).
I was told today that my child is my responsibility and NOT the states. I've been told today that I should have been prepared both emotionally and financially to handle the possibility of having a child with special needs.
How? I went to every single OBGYN appt, and everything was "normal". I had every test I could imagine that wouldn't harm the baby or me and all the results came out fine. Even his kidneys (which this is still hilarious to me) were within normal range!
Really? You're going to make me feel like a bad parent, because I had no idea that I had an 11;22 balanced translocation in my human genome and therefore produced an offspring that would never be able to fend for himself in this inhumane world?
So then every person should have at least 1.2 million dollars in their bank account to pay out of pocket for the possibility of having a child with special needs. Because that's how much it costs, out of pocket, with no insurance. I am immensely positive that I have some ES Moms that can top that!
My child has every right to have the same care that your child does. Yes, my child has to see a specialist for any possible little thing, but wouldn't yours if your child fell out of a tree and broke his arm, or God forbid, his neck? Wouldn't you want to make sure that your child has the BEST possible care that you could provide for him?
How would you feel if the care you can provide for your child was completely up to the insurance company? What if the insurance company said, "Oh well, I know that this (insert whatever medical thing here) can save your child's life, but we can't pay for that and you can't afford it out of pocket so you might as well say goodbye now."
Think about it, FEEL it, and TELL ME how that would make YOU feel.
I truly believe that this world is not ready for handicapped issues, people, or anything relating to the word handicapped, and I was proven right today. Those that are so completely insensitive and naive to think that the cost of having a child with special needs vs. the cost of having a "normal developing" child are equal, seriously needs to read a mother frikkin book, because they are completely ignorant.
I am not asking my child to be treated any differently than any other, but if my child needs to be seen by a certain Dr. there should be NO REASON, whether financial or not, that my child is unable to be seen.
Yes, my son has been turned away from other practices because "they don't take my insurance." Or they don't "take THAT form of Medicaid", and I am still LIVID about it, can't you tell? (But at least my hubby tore them a new one before we walked out of the office) I was naive enough to think that just because I had work insurance and I was paying $200 a paycheck for it that my son would be covered %100. It doesn’t. Not when you have a child with Special Needs. It doesn’t matter what insurance you have or what condition your child has. It's not right for the insurance companies to jack up the price of services (Lab work 7k? WTF!) nor is it fair to them to have to pay hundreds of thousands of dollars in malpractice insurance, but it's done anyway. So I'm sorry if you think that I am an unfit parent because I can't afford a 40k heart catheterization, but at least I'm doing something about it, all you're doing is judging.
Yes, I am the parent that will probably pitch a fit if someone is blocking the handicapped sidewalk ramp, because the other person who has NO IDEA what I'm going through is being an inconsiderate SOB and my son’s special chair weighs a ton.
Yes, I am the parent that will DEMAND to be seen at a Dr's office from here on out because now I know that it is my son's GOD GIVEN RIGHT to be seen, and it is well within his rights as a US citizen to have the state pay for that super-special-one-of-a-kind Dr. because the US has decided that raising the cost of a simple blood test will help our economy (How, I have no friggin idea, I’m not an Ecom major - just a really angry Mom). It is not my son's fault that he was born this way, and it is not my fault as a tax payer that I need to pay millions of dollars in medical bills because as some people put it "I should have known better than to not be prepared for the cost of a child with special needs." I pay my Taxes. I Pay Medicaid Taxes. My son should have the right to receive Medicaid Benefits.
Screw you and your perceptions. My Son is my gift from the universe, and as that gift it is my obligation to take care of him, by whatever means possible even if that means getting government granted need based aid.
*bows*
and off my soapbox I go... I feel better...
Thursday, February 17, 2011
Today I feel angry
Today I feel angry.
I feel angry for my son, because, well he can't feel anger. He doesn't know what anger is, and he may never know.
I feel angry that this happened to my son, and there's nothing I can do about it.
I feel angry that my son has to have test, after test, after test done to his poor little body, just to rule out possible complications on a long list of abnormal, environmental and congenital defects.
His poor little body has been through hell and back, and yet I see others whose children have had it worse. So who am I to complain?
I'm pissed. But not knowing who or what to be pissed at can make your day go by very very slowly and raise your blood pressure.
Am I pissed at myself for making my son sick? Am I pissed at Emanuel Syndrome for latching it's hell onto my child? Am I pissed at God, for giving me the beautiful yet extremely fragile little boy?
I don't know what or who I'm angry at, but I am furious.
I am angry that my son will never get married. And damnit NO, I am not being a pessimist. It is what it is. If I'm lucky my child will reach an equivalent emotional level as that of what, a 7 year old? Maybe? 7 year olds don't think about procreating. At 7 years old I was a wallflower afraid to talk to any boy because they all had cooties! I am tired of people telling me that there are all these advances in medicine so who knows what a few years from now may hold.
Really? Seriously? So you're telling me in the next few years there will be a cure for mental retardation and that my son will wake up completely normal. Wow, writing that makes ME sound like an idiot, and I am an extremely intelligent person. So imagine how that makes YOU sound.
If there isn't a cure for Cancer, Aids, Cerebral Palsy, Alzheimer's and many other diseases, syndromes, and deficiencies, what in the world would make you think that there would be a cure for a chromosomal abnormality that has about 200 documented cases.
I am angry that of all the people in all the world, my son, my only biological child, that I begged God for, and prayed for, and wanted and love more than anything on this planet (next to my husband) is the one that gets to live his life with Emanuel Syndrome.
I am angry that I will never know WHY. And I feel guilty that I am even asking for it.
Well... At least I'm not in denial....
I feel angry for my son, because, well he can't feel anger. He doesn't know what anger is, and he may never know.
I feel angry that this happened to my son, and there's nothing I can do about it.
I feel angry that my son has to have test, after test, after test done to his poor little body, just to rule out possible complications on a long list of abnormal, environmental and congenital defects.
His poor little body has been through hell and back, and yet I see others whose children have had it worse. So who am I to complain?
I'm pissed. But not knowing who or what to be pissed at can make your day go by very very slowly and raise your blood pressure.
Am I pissed at myself for making my son sick? Am I pissed at Emanuel Syndrome for latching it's hell onto my child? Am I pissed at God, for giving me the beautiful yet extremely fragile little boy?
I don't know what or who I'm angry at, but I am furious.
I am angry that my son will never get married. And damnit NO, I am not being a pessimist. It is what it is. If I'm lucky my child will reach an equivalent emotional level as that of what, a 7 year old? Maybe? 7 year olds don't think about procreating. At 7 years old I was a wallflower afraid to talk to any boy because they all had cooties! I am tired of people telling me that there are all these advances in medicine so who knows what a few years from now may hold.
Really? Seriously? So you're telling me in the next few years there will be a cure for mental retardation and that my son will wake up completely normal. Wow, writing that makes ME sound like an idiot, and I am an extremely intelligent person. So imagine how that makes YOU sound.
If there isn't a cure for Cancer, Aids, Cerebral Palsy, Alzheimer's and many other diseases, syndromes, and deficiencies, what in the world would make you think that there would be a cure for a chromosomal abnormality that has about 200 documented cases.
I am angry that of all the people in all the world, my son, my only biological child, that I begged God for, and prayed for, and wanted and love more than anything on this planet (next to my husband) is the one that gets to live his life with Emanuel Syndrome.
I am angry that I will never know WHY. And I feel guilty that I am even asking for it.
Well... At least I'm not in denial....
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